Aa
auto immune hepititus
i have been diagnosed with aih for over a year now. was chronic but is now stable. was wonderin how common breast cancer is with medication. am on azathioprine and prednisolone. was also wonderin how people with this cope with bad days. feel like i could smash house up. neva do but horrible feelin.
Hi welcome to the forum. I see Dr Smruti Mohanty, he is also a professor of medicine. I was referred to him by my Gastro, who knows him personaly. I was sent for a second opinion, just to make sure about the dx and treatment plan. He knows his stuff. If you feel the need for a second opinion, get it. I would recommend him. Learn as much as you can about AIH. Chronic AIH is what we have, AIH is chronic, we really do not get rid of it, we can control it, but not cure it. Some people go off meds for awhile, but they have a flare up and have to get back on meds. In takling with my docs, they say there are two different thoughts on that subject one is bring levels down to normal, keep them there for a few years, go off meds until a flare up. The second is bring levels down, keeps them there and reduce meds but stay on small dose for life. I was dx in June 04 was on pred and imuran together until Nov 04, then on Imuran alone. Am now considered to be in remission, see the Gastro every 6 months. Will be asking about Imuran levels, am on 100mg now.
It took me a while to feel good, after I got off pred, I was having joint pain. Went to a rheumatologist, I have arthritis and oesteopenia. We can get other auto immune stuff along with AIH, like arthritis. I was put on PrevacidNapraxPac, Oh I felt so much better. Saw him in Dec 04, started med in March 05 and by June 05, I can say I was feeling good most days. I was concerned at first about taking pain meds, but I really hurt. Docs do not agree on what pain med is best, two of mine said Aleve is easier on the liver that Tylenol. Tylenol did nothing for my pain. Talk with your doctors about what is best for you. Even though I feel good, I am only about 90% of what I was before. I can't do everything I did before, and I get reminded each time I try. But this is better than before treatment. So this is probably my new normal and I can live with that. I still get a bad day once in a while.
I would find about about an emergency doctor contact just in case, but ER would be able to contact your Dr . It would ease my mind, you will probably be fine. Sometimes it is easier to say you have autoimmune liver disease. Some people freak out at the mentions of hepatitis, even doctors. I am amazed at how few medical professional know about AIH. It's good that you will not be traveling alone.
This thread will be full now 50 comments is the limit, so I'll start a new one AutoImmuneHepatits cont. It will be toward the top of the page. Please ask anything you want. It is good to talk with others who are going thru the same thing.
Shirl That is great news. Hope you continue to feel good. I'll send your my email. I also enjoy talking with you and Lynn. I'll check out the forum you talked about. The ministry work is with underprivileged families, mostly single mother familes. We are trying to help those who are not being helped by other groups. We provide curtains for their homes and I do the calculations and plans for those. A simple thing like curtains can really improve a living area. We have some others who sew so I don't have to do all the sewing. We plan to teach some sewing skills, parenting classes, money management and simple home repair. The lack of some skills is very apparent. These folks have many levels of problems in their lives and money is not going to fix everything. We have a paid director and the rest of us are volunteers, I do need to learn to say no sometimes. I have board meeting once a month and other work varies from 4 to 8 times a month. It can be fun and frustrating.
This thread is full so I start a new, it will be at the top of the page. take care
M
It took me a while to feel good, after I got off pred, I was having joint pain. Went to a rheumatologist, I have arthritis and oesteopenia. We can get other auto immune stuff along with AIH, like arthritis. I was put on PrevacidNapraxPac, Oh I felt so much better. Saw him in Dec 04, started med in March 05 and by June 05, I can say I was feeling good most days. I was concerned at first about taking pain meds, but I really hurt. Docs do not agree on what pain med is best, two of mine said Aleve is easier on the liver that Tylenol. Tylenol did nothing for my pain. Talk with your doctors about what is best for you. Even though I feel good, I am only about 90% of what I was before. I can't do everything I did before, and I get reminded each time I try. But this is better than before treatment. So this is probably my new normal and I can live with that. I still get a bad day once in a while.
I would find about about an emergency doctor contact just in case, but ER would be able to contact your Dr . It would ease my mind, you will probably be fine. Sometimes it is easier to say you have autoimmune liver disease. Some people freak out at the mentions of hepatitis, even doctors. I am amazed at how few medical professional know about AIH. It's good that you will not be traveling alone.
This thread will be full now 50 comments is the limit, so I'll start a new one AutoImmuneHepatits cont. It will be toward the top of the page. Please ask anything you want. It is good to talk with others who are going thru the same thing.
Shirl That is great news. Hope you continue to feel good. I'll send your my email. I also enjoy talking with you and Lynn. I'll check out the forum you talked about. The ministry work is with underprivileged families, mostly single mother familes. We are trying to help those who are not being helped by other groups. We provide curtains for their homes and I do the calculations and plans for those. A simple thing like curtains can really improve a living area. We have some others who sew so I don't have to do all the sewing. We plan to teach some sewing skills, parenting classes, money management and simple home repair. The lack of some skills is very apparent. These folks have many levels of problems in their lives and money is not going to fix everything. We have a paid director and the rest of us are volunteers, I do need to learn to say no sometimes. I have board meeting once a month and other work varies from 4 to 8 times a month. It can be fun and frustrating.
This thread is full so I start a new, it will be at the top of the page. take care
M
Hi! i read that you see a doctor from university of chicago, I do as well. Her name is Dr. Reau, have you had any consults with her? Who do you see? She comes to my town every wednesday, and she is the only one I have seen for AIH so far. Am thinikng of getting a second opinion, but when you don;t know the doctors or anyone else who has seen them, it's hard to know if they are any good. I am on pred, 30 mg and myfortic also. My enzymes are down almost to normal but I still feel like **** several days out ot the week. Especially when it gets close to "cycle" time.What's chronic AIH? I also have a neurological disorder called trigeminl neuralgia, which is extremely painful. Since my biopsy, the pain in my liver has been bad, doc says i can take pain meds but don'T wANT To take anything that will go through liver. meds i take for TN don't they all go through kidneys. Was diagnosed in april this year. One moe question, I am going to portland for a week, should i have a doc looked up there in case needed, since being newly diagnosed and not stable with meds yet? I don't return to my doc for 2 more months, unless monthly blood draw deems it necessary. A friend is going with me, so I won't be alone and she knows my history. Thanks!!
SORRY-- the site is Healingwell.com I think this prednisone is affecting my brain. ( I like to blame everything on prednisone!!)
HA!
take care
shirl
HA!
take care
shirl
hi!
GUESS WHAT !!!!!!!!! when I got home from class today I had a message from my DR. to lower my pred to 2.5 !!!!! I hung up the phone and got my pill splitter out -- it didn't take me anytime at all to do that. HA ! I have felt really good for the past two days so I hope it continues. labs again in a month.
my e-mail is ***@**** just send me one and i'll have yours. both of you if you want to. just in case we get lost in the shuffle somehow. I enjoy our chats and don't want to lose you two ! I would think there would be more AIH out there? maybe if we start a new thread. if you go to a different one let me know!!!
i found another good forum. I think it is wellness.com I'll check on that and let you know for sure.then click on hepatitus and scroll to auto immune. I believe that is how I did it. a few AIH people there. one lady told her story and she has had it for 24 years. maybe more than that. encouraging anyway.
the ministry volunteer work sounds like fun and for such a good cause. do you do that often?
Lynn-- how is your back now that you;re back home ? maybe it was the cold that did it?
oh-- i just remembered. i also found a forum for prednisone weaning. I will look up the name of the site and let you know. very interesting forum too.
take care and enjoy the rest of today!
shirl
GUESS WHAT !!!!!!!!! when I got home from class today I had a message from my DR. to lower my pred to 2.5 !!!!! I hung up the phone and got my pill splitter out -- it didn't take me anytime at all to do that. HA ! I have felt really good for the past two days so I hope it continues. labs again in a month.
my e-mail is ***@**** just send me one and i'll have yours. both of you if you want to. just in case we get lost in the shuffle somehow. I enjoy our chats and don't want to lose you two ! I would think there would be more AIH out there? maybe if we start a new thread. if you go to a different one let me know!!!
i found another good forum. I think it is wellness.com I'll check on that and let you know for sure.then click on hepatitus and scroll to auto immune. I believe that is how I did it. a few AIH people there. one lady told her story and she has had it for 24 years. maybe more than that. encouraging anyway.
the ministry volunteer work sounds like fun and for such a good cause. do you do that often?
Lynn-- how is your back now that you;re back home ? maybe it was the cold that did it?
oh-- i just remembered. i also found a forum for prednisone weaning. I will look up the name of the site and let you know. very interesting forum too.
take care and enjoy the rest of today!
shirl
HI Shirl
It is interesting that you noticed being more tired and your levels going up. You really need to know your body. Take time coming off pred, a little slower is better than having a flareup.
To start a new post click on the box that says post question at the top of the main page. Cuteous advice is good we should do that.
We still have rain, hope it clears up for the long weekend. I volunteer in an outreach ministry, yesterday we assembled packback filled with school supplies for the client families, and then provided a little meal and distributed them. I am soo tired and sore, was only to take a couple hours,ha, I was there from 1 to 8:30. Everytime I do these kinds of things, my body reminds me I don't have the same energy levels as before.
I don't know what the official policy for giving out email address's is, but I have done it before. If you want to exchange them, I'd be glad to.
Have a good day
It is interesting that you noticed being more tired and your levels going up. You really need to know your body. Take time coming off pred, a little slower is better than having a flareup.
To start a new post click on the box that says post question at the top of the main page. Cuteous advice is good we should do that.
We still have rain, hope it clears up for the long weekend. I volunteer in an outreach ministry, yesterday we assembled packback filled with school supplies for the client families, and then provided a little meal and distributed them. I am soo tired and sore, was only to take a couple hours,ha, I was there from 1 to 8:30. Everytime I do these kinds of things, my body reminds me I don't have the same energy levels as before.
I don't know what the official policy for giving out email address's is, but I have done it before. If you want to exchange them, I'd be glad to.
Have a good day
Good morning!
I feel feel GREAT this morning! good sleep last night for a change !
WELCOME HOME Lynn ! it is nice to hear from you again. I am glad you had a fun vacation but sorry you had to cut it short due to back pain. maybe it was from being out in the cold ? I have back pain sometimes but it is from Scolocis , I sometimes get something called "facet" shots in the spine and that has always taken away the pain but it is a stiroid and this time when I went he told me to try a pill instead when it hurts. so I do that and I have been good. don't have to take a pill very often. the med is propoxyphene hcl 65 mg.cap
I do not have a constipation problem and never have. can it be caused from azathioprine?
I don't know of an insurance co.that can help you . we used to be able to buy air ins through AAA company but don't know if they sitll offer it. it was very cheap for a million dollars worth --I did it once . i'm surprised you can't get air ins. when you fly.
what are your kids ages Lynn? if you still have kids at home ( and I think you do) I can see why you are tired! I am tired without any kids at home ! I think it is a hepatitus life --
I said I would let you know about my lab report. well --- my Dr. is out of the office ubntil wed. but his nurse said all is well. she said my numbers have gone up some but are still in the normal range. I am not surprised as I have been very , VERY tired this week. she said he will call me tomorrow with instructions on what to do. I had hoped he would take me off the pred altogether but I kind of doubt it now. I just really want to lose this weight ! and I don't think you can lose it while you are on pred. it might help if I could walk each day but this swollen foot kills me so that is out of the question.
I made an appt to see my regular GP on sept 1st. and see what she has to say ..
take care -- have a good day!
shirl
I feel feel GREAT this morning! good sleep last night for a change !
WELCOME HOME Lynn ! it is nice to hear from you again. I am glad you had a fun vacation but sorry you had to cut it short due to back pain. maybe it was from being out in the cold ? I have back pain sometimes but it is from Scolocis , I sometimes get something called "facet" shots in the spine and that has always taken away the pain but it is a stiroid and this time when I went he told me to try a pill instead when it hurts. so I do that and I have been good. don't have to take a pill very often. the med is propoxyphene hcl 65 mg.cap
I do not have a constipation problem and never have. can it be caused from azathioprine?
I don't know of an insurance co.that can help you . we used to be able to buy air ins through AAA company but don't know if they sitll offer it. it was very cheap for a million dollars worth --I did it once . i'm surprised you can't get air ins. when you fly.
what are your kids ages Lynn? if you still have kids at home ( and I think you do) I can see why you are tired! I am tired without any kids at home ! I think it is a hepatitus life --
I said I would let you know about my lab report. well --- my Dr. is out of the office ubntil wed. but his nurse said all is well. she said my numbers have gone up some but are still in the normal range. I am not surprised as I have been very , VERY tired this week. she said he will call me tomorrow with instructions on what to do. I had hoped he would take me off the pred altogether but I kind of doubt it now. I just really want to lose this weight ! and I don't think you can lose it while you are on pred. it might help if I could walk each day but this swollen foot kills me so that is out of the question.
I made an appt to see my regular GP on sept 1st. and see what she has to say ..
take care -- have a good day!
shirl
hi!
thanks for the info. I am new to forums .I only just found out what a "thread" is. how do you start one?
the website called projectsinknowledge is new to me. I will check that one out.
I agree that the forum is more interesting with all forms of hepatitus and not just hep C. I find that we are similar in some ways and I also find it interesting anyway. I never realized that hep C had to do a series of shots for instance. how many shots in all ?? does that CURE hep c ?
You already know, I am sure, that AIH is not curable but is controlable. it's the tiredness that gets me ! I can't do much before I am totally exhausted. is it the same for hep C ?
are we allowed to give our e-mail address on this site ? just wondering.
Hope the day is great for you! I feel rested and wonderful today !!!
shirl
thanks for the info. I am new to forums .I only just found out what a "thread" is. how do you start one?
the website called projectsinknowledge is new to me. I will check that one out.
I agree that the forum is more interesting with all forms of hepatitus and not just hep C. I find that we are similar in some ways and I also find it interesting anyway. I never realized that hep C had to do a series of shots for instance. how many shots in all ?? does that CURE hep c ?
You already know, I am sure, that AIH is not curable but is controlable. it's the tiredness that gets me ! I can't do much before I am totally exhausted. is it the same for hep C ?
are we allowed to give our e-mail address on this site ? just wondering.
Hope the day is great for you! I feel rested and wonderful today !!!
shirl
hey Honey! you stumbled on the AIH bottom feeders! but there are a couple of threads below that are not full yet, so we can share with our friends here.
AIH folks; as you can see, some other folks like to socialize at the quiet bottom, it is nice and private. Your thread will fill up soon at 50, so move up or down to any that have few comments so that you can keep going for a while!
if any of you do not know this site: projectsinknowledge.com, please visit it for great information. If you have not seen this one: http://www.autoimmunehepatitis.co.uk/main.htm, you can check it out. But MH has the best format that I have seen, and more people. I would suggest that, since MH now has almost unlimited questions slots, that one of you open a daily or weekly thread just for AIH conversation and chattting. I strongly suggest that you guys secure a slot. All hepatitis should be represented, not just hep c. If you had one or two threads, and people were googling AIH, they could very well end up here and join you guys. I really hope that this forum becomes more balanced with other hepatitis represented. There seem to be a large AIH community in need of online socialization and information groups. Ok, sorry if I overstepped anything, but think about it, at least? Don't let the hep c group hoard the forum! ;-) or the bottom feeders!
AIH folks; as you can see, some other folks like to socialize at the quiet bottom, it is nice and private. Your thread will fill up soon at 50, so move up or down to any that have few comments so that you can keep going for a while!
if any of you do not know this site: projectsinknowledge.com, please visit it for great information. If you have not seen this one: http://www.autoimmunehepatitis.co.uk/main.htm, you can check it out. But MH has the best format that I have seen, and more people. I would suggest that, since MH now has almost unlimited questions slots, that one of you open a daily or weekly thread just for AIH conversation and chattting. I strongly suggest that you guys secure a slot. All hepatitis should be represented, not just hep c. If you had one or two threads, and people were googling AIH, they could very well end up here and join you guys. I really hope that this forum becomes more balanced with other hepatitis represented. There seem to be a large AIH community in need of online socialization and information groups. Ok, sorry if I overstepped anything, but think about it, at least? Don't let the hep c group hoard the forum! ;-) or the bottom feeders!
hi u two. sos havent been talkin. Had to come back from campin a day early had really bad back pain. have been back a week now and it is slowly gettin betta. do either of you get this? I too get really tired very quickly. I think this is one of the things that gets me down as i used to be really energetic now thats ancient history. As for the camping trip, yes the weather was cold and windy but we are used to that so that was cool. air bed went down as well but all in all it was fun. planning next holiday to disney in paris. been to florida 10 years ago now cant get insurance to fly to the usa,or to get life cover. my life cover ran out one month before diagnosis now cant find anyone to cover me do either of you know any companies? hope you are both o.k and feelin well . glad your hubby is O.k shirl and feelin beta. Teaching painting sounds fun. Do either of you suffer from constipation? sorry just thought of that question!! am at specialist on thurs this week, boy have i got sum questions for him. I too am gona ask for my labs and my biopsy results. i have the pleasure if another biopsy in april next year and have to have one every two years. what fun!!! luv to you both. lynn.
Hi Lynn Glad you are back from your vacation. Wet and damp, had alot of camping trips like that over the years. I don't know much about travel insurance. That is something we in the USA just do not get. But from the site in the uk, several people got policies from Freedom insurance http://www.freedominsure.co.uk They said they were turned down by other companies, but got resonable prices. Check out the insurance details under the forum at autoimmunehepatitis.co.uk
I have had back pain also, it's better now that the rheumatologist has me on some pain meds. I don't know what is causing it, maybe oesteopenia or arthritis? Ask questions of your dr. I keep a journal of symptoms and question, because sometimes it is easy to forget all the thing I wanted to talk about. I take the journal with me. Constipation, no but I eat lots of vegetables and drink water. Keep informed about your health, it is good for you to have an active role in your own care.
Let us know how it goes with your Dr.
M
I have had back pain also, it's better now that the rheumatologist has me on some pain meds. I don't know what is causing it, maybe oesteopenia or arthritis? Ask questions of your dr. I keep a journal of symptoms and question, because sometimes it is easy to forget all the thing I wanted to talk about. I take the journal with me. Constipation, no but I eat lots of vegetables and drink water. Keep informed about your health, it is good for you to have an active role in your own care.
Let us know how it goes with your Dr.
M
Hi Shirl
Yes, I have gotten one really bad cold. I needed antibiotics. It came on suddenly, almost like fine one hour, really sick the next. My Dr said is was OK to use Dayquil or Nyquil liqidcaps, because they have no alcohol. I also get allergy related asthma, so I use my inhalor at the first sign. I just had the one bad cold so far.
I have purel hand sanitizer in my purse, I wipe down grocery cart handles before I use them. Wash my hands often, and I will stay away if I know that people are sick. So far this has seemed to work for me. No Dr has mentioned needing to go back on pred because of an illness. Since you are traveling it might be good to have a script just in case. Our Dr will do this for my daughter and my self. He knows I will not use it unless necessary.
It is good to talk about this stuff with your Dr. Hope you get goodnews about your labs.
Take care
M
Yes, I have gotten one really bad cold. I needed antibiotics. It came on suddenly, almost like fine one hour, really sick the next. My Dr said is was OK to use Dayquil or Nyquil liqidcaps, because they have no alcohol. I also get allergy related asthma, so I use my inhalor at the first sign. I just had the one bad cold so far.
I have purel hand sanitizer in my purse, I wipe down grocery cart handles before I use them. Wash my hands often, and I will stay away if I know that people are sick. So far this has seemed to work for me. No Dr has mentioned needing to go back on pred because of an illness. Since you are traveling it might be good to have a script just in case. Our Dr will do this for my daughter and my self. He knows I will not use it unless necessary.
It is good to talk about this stuff with your Dr. Hope you get goodnews about your labs.
Take care
M
hi Maari
it is raining here. yes- our weather this summer has been crazy too. lots of rain in the beginning and then it turned really hot and got up to almost 100 degrees. not like typical vermont weather . it feels like Fall now and I love it.
my students are from age 12 and up. have even had quite a few in their 80s and they do well too. it's a fun career.
I am anxious to call my Dr. tomorrow to see if I can lower my pred or get off altogether.]
I have a question. --- since you were diagonosed--- what do you do if you catch a bad cold or flu? do you have to call your Dr. and does he put you back on pred ??? I am nervous about that since we will be traveling a lot and around a lot of people. . I plan to ask my Dr about it when I see him in oct but I'm just wondering what you do ?
wonder if Lynn is still camping! where are you lynn?? hopefully all is well and you had a great time?
will let you know if I get off pred. ( that noise you hear will be me CHEERING!!!!! ) :-)
Enjoy your day and I will enjoy our rainy one!
Shirl.
it is raining here. yes- our weather this summer has been crazy too. lots of rain in the beginning and then it turned really hot and got up to almost 100 degrees. not like typical vermont weather . it feels like Fall now and I love it.
my students are from age 12 and up. have even had quite a few in their 80s and they do well too. it's a fun career.
I am anxious to call my Dr. tomorrow to see if I can lower my pred or get off altogether.]
I have a question. --- since you were diagonosed--- what do you do if you catch a bad cold or flu? do you have to call your Dr. and does he put you back on pred ??? I am nervous about that since we will be traveling a lot and around a lot of people. . I plan to ask my Dr about it when I see him in oct but I'm just wondering what you do ?
wonder if Lynn is still camping! where are you lynn?? hopefully all is well and you had a great time?
will let you know if I get off pred. ( that noise you hear will be me CHEERING!!!!! ) :-)
Enjoy your day and I will enjoy our rainy one!
Shirl.
Hey!
nice to hear two new voices !
do you two have AIH as well? I'm still trying to learn about it. with medical science moving so fast maybe they will come up with a cure-- who knows! wouldn'tTHAT be nice !
every once in awhile I check other threads and find interesting information but I don't know much about hep c either. is that you ??? it sounds like it is curable unlike AIH ??
take care
come by again and say hi ?!
shirl
nice to hear two new voices !
do you two have AIH as well? I'm still trying to learn about it. with medical science moving so fast maybe they will come up with a cure-- who knows! wouldn'tTHAT be nice !
every once in awhile I check other threads and find interesting information but I don't know much about hep c either. is that you ??? it sounds like it is curable unlike AIH ??
take care
come by again and say hi ?!
shirl
Hey!
nice to hear two new voices !
do you two have AIH as well? I'm still trying to learn about it. with medical science moving so fast maybe they will come up with a cure-- who knows! wouldn'tTHAT be nice !
every once in awhile I check other threads and find interesting information but I don't know much about hep c either. is that you ??? it sounds like it is curable unlike AIH ??
take care
come by again and say hi ?!
shirl
nice to hear two new voices !
do you two have AIH as well? I'm still trying to learn about it. with medical science moving so fast maybe they will come up with a cure-- who knows! wouldn'tTHAT be nice !
every once in awhile I check other threads and find interesting information but I don't know much about hep c either. is that you ??? it sounds like it is curable unlike AIH ??
take care
come by again and say hi ?!
shirl
Hi Shirl
Glad to hear the good news about your husband. I hope your lab results are good. Do you teach all age groups? Have you been having odd weather? We got lots of heavy rain and hail. It sounded like someone was popping popcorn in the microwave. Quite spetacular.
Have a busy weekend planned, so hope the weather is good. Have a good weekend
M
Glad to hear the good news about your husband. I hope your lab results are good. Do you teach all age groups? Have you been having odd weather? We got lots of heavy rain and hail. It sounded like someone was popping popcorn in the microwave. Quite spetacular.
Have a busy weekend planned, so hope the weather is good. Have a good weekend
M
Hi
It has been a long day--My husband had to go in for a cardiac carthrization. it turned out that the stress test was a false/positive reading so he did not have a blockage after all. too bad he had to go through with it all but good in the end anyway. it was a long wait at the hospital for me. we were there most of the day so I decided to run downstairs and get my labs done since I was already there. now I have to wait about three days before I call to find out the results. I wonder if he will take me off prednizone altogether!!!!! don't I wish !!!!!!! I will call his office on monday to find out.
It seems like peoples biopsies read differently. there is a site called Janis --- have you seen it? good info on reading biopsies and also labs. I just discovered it.
I have been teaching for about 20 years now. I know it inside and out. so I took up watercolor for the challenge and believe me -- it is a challenge ! I have a wonderful instructor and fellow students. we have a really fun time in classes. my teacher likes to paint outdoors a lot so that is even better.
i wonder where Lynn is -- maybe she is still camping. she never said how long she would be gone .
will talk to you later -- I will be sure to let you know what my Dr. says about the pred.
take care ---
shirl
It has been a long day--My husband had to go in for a cardiac carthrization. it turned out that the stress test was a false/positive reading so he did not have a blockage after all. too bad he had to go through with it all but good in the end anyway. it was a long wait at the hospital for me. we were there most of the day so I decided to run downstairs and get my labs done since I was already there. now I have to wait about three days before I call to find out the results. I wonder if he will take me off prednizone altogether!!!!! don't I wish !!!!!!! I will call his office on monday to find out.
It seems like peoples biopsies read differently. there is a site called Janis --- have you seen it? good info on reading biopsies and also labs. I just discovered it.
I have been teaching for about 20 years now. I know it inside and out. so I took up watercolor for the challenge and believe me -- it is a challenge ! I have a wonderful instructor and fellow students. we have a really fun time in classes. my teacher likes to paint outdoors a lot so that is even better.
i wonder where Lynn is -- maybe she is still camping. she never said how long she would be gone .
will talk to you later -- I will be sure to let you know what my Dr. says about the pred.
take care ---
shirl
Hi I have not heard of a fibroscan. I am going to check that out. Thanks for the info. Even though our diseases are different, we do have much in common. Several times in reading posts I have thought you have it harder than I do. I am so glad that you are free of hcv.
Take care
M
Take care
M
Hi Shirl
I have heard of Bob Ross and his happy little trees. Watching him paint makes it seem easy. How neat that you have that kind of talent. Have you been teaching for a long time?
New laptop is a great idea, so much easier to travel with. That way you and stay in touch. Researching what you need good plan.
My biopsy said panacinar hepatitis, moderately active with portal fibrosis. Plasma cells are prominent, there is focal hepatocanalicular cholestatsis. These findings are suspicious for autoimmune hepatitis. Each one of us is different, and there are several types of AIH. My ALT AST got in the 900's and bili was 8.0. It is soo good not to be yellow. Ours have some similarity and some differience. The Dr said I will probably need to be on meds the rest of my life also.
Have a good day too
M
I have heard of Bob Ross and his happy little trees. Watching him paint makes it seem easy. How neat that you have that kind of talent. Have you been teaching for a long time?
New laptop is a great idea, so much easier to travel with. That way you and stay in touch. Researching what you need good plan.
My biopsy said panacinar hepatitis, moderately active with portal fibrosis. Plasma cells are prominent, there is focal hepatocanalicular cholestatsis. These findings are suspicious for autoimmune hepatitis. Each one of us is different, and there are several types of AIH. My ALT AST got in the 900's and bili was 8.0. It is soo good not to be yellow. Ours have some similarity and some differience. The Dr said I will probably need to be on meds the rest of my life also.
Have a good day too
M
I actually confused you with maamir, who posts about his brother in Pakistan, so, I saw all the letters in the names merge before my eyes> what a coincidence about your bro in law.
I had seen your exchange with Scott, who was dx with AIH due to interferon tx for HCV. That is what I had, hcv. got rid of it a year ago. I am so sorry you are dealing with a condition without a true cure yet. I went for a conference given by my hepatologist, David Bernstein, in NY, and what he said about AIH, made me respect all of you struggling with it.
has anyone researched the possibility of getting a fibroscan in lieu of a bx? I am not sure if the test is available for individuals with AIH. It is limited to a few HCV infected as far as I know. wouldn't hurt to email them and see. Plus, Someone posted about a core biopsy in a thread above. I had never heard of it before. Sounds quite comprehensive!
anyway, I would leave you to your devices and will join the bottom feeders below.
take care
I had seen your exchange with Scott, who was dx with AIH due to interferon tx for HCV. That is what I had, hcv. got rid of it a year ago. I am so sorry you are dealing with a condition without a true cure yet. I went for a conference given by my hepatologist, David Bernstein, in NY, and what he said about AIH, made me respect all of you struggling with it.
has anyone researched the possibility of getting a fibroscan in lieu of a bx? I am not sure if the test is available for individuals with AIH. It is limited to a few HCV infected as far as I know. wouldn't hurt to email them and see. Plus, Someone posted about a core biopsy in a thread above. I had never heard of it before. Sounds quite comprehensive!
anyway, I would leave you to your devices and will join the bottom feeders below.
take care
hi
I'm thinking you might be back from camping by now Lynn?? how did it go ? did you enjoy tenting again ? hope the weather was agreeable!
I figured out what the tread meant that same night I asked you about it maari--I was laying in bed THINKING when I should have been SLEEPING and it dawned on me what it must have meant but thanks for explaining it anyway.
this winter we plan to buy a new laptop with WIFI connection ( or whatever) so we can use that for e-mailing. we just have to learn about wifi. I know for a fact that we can take the laptop to the rec hall at the campground where we will be and can plug it in there and use it.
my biopsy seems different than others-- i've read what other people say is in theres. mine does not state what stage my liver is in. it does say :
Severely active ( grade 4 out of 4) that is the severity of the action of the disease from what I understand. at that time my ALT and AST were in the 1500's. he said I do not have cirrocis . I do have bridging fibrosis and parenchymal collapse which may be a reversible process. it states significant interface hepatitis and heptocellular damage. plasma cells are prominent. native bile ducts intact.
so I don't know. I asked the Dr. and he said I am stage 3.
everything is back in the normal range now WITH MEDICATION! he said he might never do another biopsy-- it depends on how I do with the meds. if he does one it won't be until next year anyway. so is mine similar to yours?? I will probably be on medication of some sort for the rest of my life.
I had two classes in a row --sat and sunday. now I am done for two days then have a big class on wednesday. I am a certified BOB ROSS instructor for painting. you may have seen him on PBS t.v show? he has an afro hairstyle and paints " happy little trees" ? the show is called " the joy of painting".-- I also am learning watercolors. that is hard but I love it.
it is rainy today --- good day to sew.
take care both of you and enjoy the day !
shirl
I'm thinking you might be back from camping by now Lynn?? how did it go ? did you enjoy tenting again ? hope the weather was agreeable!
I figured out what the tread meant that same night I asked you about it maari--I was laying in bed THINKING when I should have been SLEEPING and it dawned on me what it must have meant but thanks for explaining it anyway.
this winter we plan to buy a new laptop with WIFI connection ( or whatever) so we can use that for e-mailing. we just have to learn about wifi. I know for a fact that we can take the laptop to the rec hall at the campground where we will be and can plug it in there and use it.
my biopsy seems different than others-- i've read what other people say is in theres. mine does not state what stage my liver is in. it does say :
Severely active ( grade 4 out of 4) that is the severity of the action of the disease from what I understand. at that time my ALT and AST were in the 1500's. he said I do not have cirrocis . I do have bridging fibrosis and parenchymal collapse which may be a reversible process. it states significant interface hepatitis and heptocellular damage. plasma cells are prominent. native bile ducts intact.
so I don't know. I asked the Dr. and he said I am stage 3.
everything is back in the normal range now WITH MEDICATION! he said he might never do another biopsy-- it depends on how I do with the meds. if he does one it won't be until next year anyway. so is mine similar to yours?? I will probably be on medication of some sort for the rest of my life.
I had two classes in a row --sat and sunday. now I am done for two days then have a big class on wednesday. I am a certified BOB ROSS instructor for painting. you may have seen him on PBS t.v show? he has an afro hairstyle and paints " happy little trees" ? the show is called " the joy of painting".-- I also am learning watercolors. that is hard but I love it.
it is rainy today --- good day to sew.
take care both of you and enjoy the day !
shirl
Hi Shirl
I don't know why you can't get on the autoimmunehepatitis.co.uk
site. When you get there the first screen is blue with an oval picture and the words "you're not alone" under that "enter" click on enter. 2nd screen "AIH Support Group" across top, under that there are words in boxes, click on "Forum". 3rd screen "AIH Support Group" across top, on right hand side in blue box "AIH support forum" under that new forum, click on" new forum". This takes you to the forum, browse all you want, if you want to post you will need to register. Just click on that line to do so. There is no charge for this. Hope this helps, it just takes a little time to get use to , but I know you will be able to do it. This is a great site with lots of information.
The thread that is talked about on this site, is each new topic post, in this case Lynn started this one. They allow only a certain number of new topics each day, sometimes all the threads are used up. Sometimes they talk about hijacking a post that is using it for other topics then what it started out as.
I learned how to use the computer so that I could learn more about AIH. I got tired of asking for help, and wanted to do it for myself. My family Husband , older daughter and son all work in the computer field. Now my son has said WOW Mom you did that by yourself, you are getting to be computer savvy. That felt good. I think it would be good for you to have access to the internet while on vacation by using the computer club or a library. You can use the internet there.
I know what you mean reading the biopsy report is blunt. Mine said I was stage 3. I really want a second one, but the Gastro said No, because my labs are good and it is dangerous. Hope your back does not bother you much. These last couple days, I have had more joint pain, so much i was thinking about going back to the rheumatologist and asking for stronger pain meds. But a storm front come thru and now I'm feeling better.
It sounds like you are very busy, teaching art, how neat. One of my favorite painters Frederic Church was a lanscape painter. Went thru his home Olana in Hudson on the River, we took my parents along, even my Dad liked it. I do like art.
I hope Lynn is having a good time camping.
Have a great weekend.
M
I don't know why you can't get on the autoimmunehepatitis.co.uk
site. When you get there the first screen is blue with an oval picture and the words "you're not alone" under that "enter" click on enter. 2nd screen "AIH Support Group" across top, under that there are words in boxes, click on "Forum". 3rd screen "AIH Support Group" across top, on right hand side in blue box "AIH support forum" under that new forum, click on" new forum". This takes you to the forum, browse all you want, if you want to post you will need to register. Just click on that line to do so. There is no charge for this. Hope this helps, it just takes a little time to get use to , but I know you will be able to do it. This is a great site with lots of information.
The thread that is talked about on this site, is each new topic post, in this case Lynn started this one. They allow only a certain number of new topics each day, sometimes all the threads are used up. Sometimes they talk about hijacking a post that is using it for other topics then what it started out as.
I learned how to use the computer so that I could learn more about AIH. I got tired of asking for help, and wanted to do it for myself. My family Husband , older daughter and son all work in the computer field. Now my son has said WOW Mom you did that by yourself, you are getting to be computer savvy. That felt good. I think it would be good for you to have access to the internet while on vacation by using the computer club or a library. You can use the internet there.
I know what you mean reading the biopsy report is blunt. Mine said I was stage 3. I really want a second one, but the Gastro said No, because my labs are good and it is dangerous. Hope your back does not bother you much. These last couple days, I have had more joint pain, so much i was thinking about going back to the rheumatologist and asking for stronger pain meds. But a storm front come thru and now I'm feeling better.
It sounds like you are very busy, teaching art, how neat. One of my favorite painters Frederic Church was a lanscape painter. Went thru his home Olana in Hudson on the River, we took my parents along, even my Dad liked it. I do like art.
I hope Lynn is having a good time camping.
Have a great weekend.
M
hi!
thanks for the positive thoughts !!
are you also a heppa ??
it's not bad --- i'm comfortable and can do most of what I used to do. it has been an enlightening experiance I can tell you --- I have learned a lot about a lot of things !!!!
thanks for your kind words. stay in touch !
Shirl
thanks for the positive thoughts !!
are you also a heppa ??
it's not bad --- i'm comfortable and can do most of what I used to do. it has been an enlightening experiance I can tell you --- I have learned a lot about a lot of things !!!!
thanks for your kind words. stay in touch !
Shirl
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